1. Index ED organization based in North America offering information/advice to individuals and supporting scientif Category Health Conditions and Diseases ectodermal dysplasia......The National Foundation for ectodermal dysplasias (NFED) is committed to assistingpeople with ectodermal dysplasia to live not only normal life spans, but http://www.nfed.org/

What is Ectodermal Dysplasia? The EDucator (NFED Newsletter) Publications NFED Services Current Research Frequently Asked Questions ... Upcoming Fundraisers The National Foundation for Ectodermal Dysplasias (NFED) is committed to assisting people with ectodermal dysplasia to live not only normal life spans, but nearly normal life styles. National Office P.O. Box 114, 410 E. Main Mascoutah, IL 62258-0114 USA Phone - 618-566-2020 Fax - 618-566-4718 E-mail - info@nfed.org Office Hours 8 a.m. -4 p.m. CST Regional Office P .O. Box 2069 Auburn, WA 98071-2069 USA Phone / Fax - 253-735-5195 E-mail - betsy@nfed.org Update 2/03 The NFED does not endorse any products or treatments for ED. Staff Executive Director Mary Kaye Richter maryk@nfed.org

2. Ectodermal Dysplasia Society Home Page Information about the organization as well as the ED condition. Includes links, news articles and Category Health Conditions and Diseases ectodermal dysplasia......ectodermal dysplasia Society. Welcome to our website. ectodermal dysplasia Society Frames Version. ectodermal dysplasia Society - Text Only Version. http://www.ectodermaldysplasia.org/

Ectodermal Dysplasia Society Welcome to our website This website has been developed by the Ectodermal Dysplasia Society (formerly known as the British Ectodermal Dysplasia Support Group) to help people with Ectodermal Dysplasia (ED). ED is not a single disorder, but a group of closely related conditions. More than 150 different syndromes have been identified. The Ectodermal Dysplasias are heritable conditions in which there are abnormalities of two or more ectodermal structures such as the hair (tends to be very thin and sparse), teeth (absent, pointed or conical), nails, sweat glands (little or no sweating), cranial-facial structure, the eyes, digits and other parts of the body. Each combination of features represents another type of ED Syndrome and has a specific name. You may have found our site because you have some of these symptoms; if so, enter our site below to find out more. Please click on one of the two links below to enter our site. To aid navigation and to view graphics, we recommend using the frames version. However, if you are using technology such as synthesised speech or Braille output software please use the text only version. Ectodermal Dysplasia Society - Frames Version Ectodermal Dysplasia Society - Text Only Version

3. The Contact A Family Directory - ECTODERMAL DYSPLASIA ectodermal dysplasia (ED) is not a single disorder, but a group of closely related conditions. http://www.cafamily.org.uk/Direct/e14.html

printer friendly ECTODERMAL DYSPLASIA home more about us in your area conditions information ... how you can help search this site Ectodermal Dysplasia (ED) is not a single disorder, but a group of closely related conditions. More than 150 different syndromes have been identified. The Ectodermal Dysplasias are heritable conditions in which there are abnormalities of two or more ectodermal structures such as the hair, teeth, nails, sweat glands, cranial-facial structure, digits and other parts of the body. Before a developing fetus is large enough to be seen, a layer of cells covers the outside of the body. This surface layer of cells is called the ectoderm, and from it develop the skin, hair, nails, teeth, nerve cells, sweat glands, parts of the eye and ear, and parts of some other organs. Each of the listed parts of the body, then, is called an ectodermal structure. There are many disorders that involve one of these structures only and are not properly called ED. Any combination of defects involving more than one of these structures, however, should be called an Ectodermal Dysplasia Syndrome; the list of such combinations is extensive. For example, one person may have missing teeth and defective nails, while another may have missing teeth, inability to sweat and sparse hair. Still another may have sparse hair and a hearing loss. Each combination of features represents another type of ED Syndrome and has a specific name. The severity of the condition varies from individual to individual and family to family.

4. The Ectodermal Dysplasia Mailing List Includes instructions on joining the list, FAQs and links to further resources. http://hometown.aol.com/charliein/ed/home.html

htmlAdWH('7008213', '120', '30'); htmlAdWH('7004798', '234', '60'); Main Create Edit Help The Ectodermal Dysplasia Mailing List Web Page Welcome to the homepage of the ED Mailing List Web Page . Here we'll provide a source of information that has been posted on the ED Mailing List as well as a list of useful links to other resources. It is independently operated and supported by people with ED (or related conditions), or friends/family of those who know people with it. What we offer: Our Frequently Asked Questions (FAQ). How to join the List Useful Links to Resources ( under construction! Be sure to visit our ED FAMILY PAGE Additional information and resources can be found at Michael Christy's ED INFORMATION PAGE Check out some photos from one of members: HypocuED ED Information in French: Oliver Le Mo NEW ! Get an e-mail alert when this page changes! Please keep this in mind: The ED Mailing List and this web site are contributed to and maintained by individuals who have been touched by ED. Many of the postings deal with the ways these individuals have handled their ED. You are welcome to contribute to the discussion and take whatever information you find useful. Please remember : this List and web site are not affiliated with any medical group, hospital or physician. Any advice or suggestions you gain from these postiings are to be used at your own risk.

5. The Sarah Moody Foundation Find out about hypohidrotic ectodermal dysplasia, a medical disorder characterized by the lack of sweat glands. http://www.hedfoundation.org/

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6. Uhrad.com Pediatric Imaging Teaching Files uhrad.com Pediatric Imaging Teaching Files Case Fifty Eight - ectodermal dysplasia Click on Images for Enlarged View Clinical History 2 year old male noted to have delayed/lack of eruptions of teeth and a sparse amount of hair. http://www.uhrad.com/pedsarc/peds058.htm

uhrad.com - Pediatric Imaging Teaching Files Case Fifty Eight - Ectodermal Dysplasia Click on Images for Enlarged View Clinical History: 2 year old male noted to have delayed/lack of eruptions of teeth and a sparse amount of hair. Findings: An AP and lateral view of the skull demonstrates absent teeth. The upper central incisors are separated and irregular in shape. The lateral view demonstrates protuberant lips. Diagnosis: Ectodermal dysplasia. Discussion: Ectodermal dysplasia is an x-linked recessive syndrome seen in approximately 1/10,000 to 1/100,000 live male births. Its clinical manifestations include hypotrichosis, hypohidrosis, unusual facies and mucous gland deficiencies. The patients typically will have oligodontia or anodontia. Frontal bossing, a saddle-shaped nose, as well as protuberant lips and ears can often be seen. Due to mucous gland deficiencies, recurrent respiratory tract infections are common. These patients can also have hearing problems secondary to accumulation of wax in the external auditory canal, eczema, and deficiency of saliva leading to dental decay. Prenatal diagnosis can be made using DNA-based linkage analysis during the first trimester of pregnancy or direct histological analysis of fetal skin obtained by fetoscopy during the second trimester of pregnancy.

7. Ectodermal Dysplasias What is ectodermal dysplasia? What are the ectodermal dysplasia Syndromes?The ectodermal disfigurement. What causes ectodermal dysplasia? During http://www.nfed.org/ectoderm.htm

What is Ectodermal Dysplasia? What is Ectodermal Dysplasia? The EDucator (NFED Newsletter) Publications NFED Services Current Research Frequently Asked Questions ... Volunteer Opportunities What are the Ectodermal Dysplasia Syndromes? The ectodermal dysplasia syndromes, (abbreviated ED), are a group of genetic disorders which are identified by the absence or deficient function of at least two derivatives of the ectoderm. (i.e. teeth, hair, nails, glands). At least 150 different ED have been identified. Charles Darwin identified the first ED syndrome in the 1860s. How many people are affected by ED? We are not certain. The number is estimated as high as 7 in 10,000 births (published in the 1990 edition of The Birth Defects Encyclopedia). How does ED affect people physically? Individuals affected by ED have abnormalities of sweat glands, tooth buds, hair follicles and nail development. Some types of ED are mild while others are devastating. Other symptoms may include: deficient tears and saliva poorly functioning mucous membranes frequent respiratory infections hearing or vision deficits missing fingers or toes cleft lip and/or palate problems with immune system sensitivity to light

8. Experimental Ophthalmology Unit, University Of Liverpool, UK Research and teaching centre for the control and treatment of eye disorders and our interests include ARMD, corneal scarring, diabetes, ectodermal dysplasia, genetics, glaucoma, melanoma and PVR. http://www.liv.ac.uk/ophthalmology/

Experimental Ophthalmology Unit * Home Page AMD/ARMD Cornea Ectodermal Dysplasia Glaucoma ... University Feedback: ophthalmology@liv.ac.uk Unit Leader - Professor Ian Grierson What's New? Recent Publications Contact Us/Personnel List Welcome to the Experimental Ophthalmology Unit, a clinical, research and teaching centre for the control and treatment of eye disorders. Our interests include AMD/ARMD, corneal scarring, diabetes, ectodermal dysplasia, genetics, glaucoma, melanoma and PVR. Our Unit is comprised of both the Academic Unit of Ophthalmology and the clinical St Paul's Eye Unit. The Academic Unit is located in the Department of Medicine which is part of the Faculty of Medicine at the University of Liverpool RLBUHT ). Our Unit performs basic science and clinical research into the control of eye disease and ocular tissue repair and regeneration. We are also the focus of a wide variety of teaching activities at levels ranging from undergraduate to postgraduate, medical and non-medical. The Academic Unit currently employs over 20 research scientists committed to the development of novel techniques that will improve the understanding and treatment of ocular disorders. Ongoing projects within the Experimental Ophthalmology Unit include analysis of the:

9. Ectodermal Dysplasia. ectodermal dysplasia. National Foundation for ectodermal dysplasias. 410 E. Main Street, P.O. Box 114 http://centerforimage.com/ectodermal.htm

Ectodermal Dysplasia What is Ectodermal Dysplasia? The ectodermal dysplasias (ED) are a group of genetic disorders which are identified by the absence or deficient function of at least two derivatives (i.e, teeth, hair, nails, sweat glands) of the ectoderm. At least 150 different forms of ED have been identified. Charles Darwin first identified ED in the 1860s. How does ED affect persons physically? Researchers estimate 23% of people affected by hypohidrotic ectodermal dysplasia, the most common form, are not expected to survive their infancy if the condition goes undiagnoses. Individuals affected by ED have two or more of the following symptoms: •absence of sweat glands •malformed finger and/or toe nails •multiple missing teeth •sparse hair, eyelashes and brows In addition to the above symptoms, they may also have.. •cleft lip and palate •deficient tears and saliva •frequent respiratory infections •hearing or sight defects •missing fingers or toes •poorly functioning mucous membranes •problems with immune system •other abnormalities of the ectoderm What causes Ectodermal Dysplasia?

10. Ectodermal Dysplasia Society Home Page http://www.ectodermaldysplasia.org/frame.htm

11. Ectodermal Dysplasia ectodermal dysplasia (ED) is a genetic birth defect which is defined by the irregular development of at least two structures derived from the ectoderm. more newsletters. ectodermal dysplasia. Our son has ED (ectodermal dysplasia). http://www.parentsplace.com/expert/dentist/qas/0%2C10338%2C200533_106972%2C00.ht

var cimsCid = ''; var cimsUid = '106972'; main COMMUNITY Message Boards Chats ... Community Challenges find on iVillage on astrology on babies on beauty on books on food on health on lamaze.com on money on parenting on pets on relationships on women.com on work MAGAZINES on Cosmopolitan on Country Living on Good Housekeeping on House Beautiful on Marie Claire on Redbook on Victoria you are here: iVillage parentsplace experts dentist ... Talent Test more centers iMaternity Shop Amazon RECOMMENDED Baby-Making Basics Are You Pregnant? Chinese Gender Chart Top Baby Names by State ... Postpartum Depression: Are You at Risk? WHAT'S NEW Best Advice for Life after Baby Twin Pregnancy Symptoms Week-by-Week Pregnancy Guide TOPICS Activities and fun Ages and stages Behavior problems Child health ... Parenting A-Z FEATURES Boards Chats Experts Quizzes ... Tools FREE NEWSLETTERS ParentsPlace more newsletters Ectodermal Dysplasia Our son has ED (ectodermal dysplasia). He has a milder case of ED and was fortunate to have received all of his baby teeth. With ED, there is great likelihood that his permanent teeth will not all be there. At what age do the permanent teeth develop prior to appearing. In other words, I assume that the permanent teeth develop prior to appearing. Our son was X-rayed, and they found that about six (permanent teeth) were visible. He is almost four years old. Is it possible that more teeth will appear later on? Up until what age could the permanent teeth develop? Kim Loos Dr. Kimberly A. Loos practices general dentistry and is also a clincial instructor in San Jose, California.

12. NORD - Hypohidrotic Ectodermal Dysplasia Offers synonyms, a general discussion and resources. http://www.stepstn.com/cgi-win/nord.exe?proc=Redirect&type=rdb_sum&id=80

13. THE ANDY FUND Describes the health condition of ANDY who was born with ectodermal dysplasia with immune deficiency caused by a mutation on the fourth part of the NEMO gene. http://www.andy.org.mx

THE ANDY FUND at Children's Hospital Trust "Investigadores aprendieron del DNA de Andy en Octubre 2000 que la mutación en el gen NEMO ocasiona deficiencia inmunológica primaria y displasia ectodérmica, dijo el Dr. Jordan Orange" The Daily News Tribune, 21 Febrero, 2003 "Researchers learned from Andy's DNA in October 2000 that a mutated NEMO gene causes both primary immune deficiency and ectodermal dysplasia, Dr. Jordan Orange said" The Daily News Tribune, Feb. 21, 2003 ENCONTRANDO NEMO Esta es la historia de Andy, un niño de tres años muy valiente. Conozca las diez principales señales de Deficiencias Inmunológicas Primarias. 493 días en el hospital. Encuentre tips para Papás en el hospital. Lo que hemos aprendido del dolor. Datos de reacciones y tratamiento al dolor en niños. Respuestas a enfermedades y hospitalización en niños. Aprenda un poco de genética y del sistema inmunológico. Lea nuestros más de 400 comentarios en el Libro de Visitas de Andy.

14. Experimental Ophthalmology Unit, University Of Liverpool, UK Eye Problems and ectodermal dysplasia. Our first goal, is to investigatethe nature and prevalence of ocular disease in ectodermal dysplasia. http://www.liv.ac.uk/ophthalmology/ed.htm

Experimental Ophthalmology Unit Eye Problems and Ectodermal Dysplasia Home Page AMD/ARMD Cornea * Ectodermal Dysplasia Glaucoma Ocular Melanoma Oculomotor Control PVR ... University Feedback: ophthalmology@liv.ac.uk Introduction An ectodermal dysplasia (ED) is disorder that results from abnormal formation of the ectodermal layer in the developing embryo. The ectoderm of the embryo forms the hair, teeth, nails, sweat glands and parts of the eyes. The ectodermal dysplasias are a diverse group of conditions and over a 100 different types have been described. To understand the eye problems in ED, you must understand the basic structure and function of the eye. This page will briefly describe the anatomy of the eye and how the eye develops in the embryo, in particular the role of the ectoderm. How different structures and functions of the eye are affected by ED will be covered, leading into the treatments available for different ocular problems, and to finish, a look to the future. Basic Eye Structure The eye consists not only of the globe but also the surrounding structures - the lids, the tear drainage passage and the tear or lacrimal gland. The globe of the eye consists of an outer coat, a middle layer and an inner layer. The outer coat is made up of a tough fibrous, white layer - the sclera, and a clear transparent window - the cornea. The middle layer contains pigment and forms the iris. The inner layer is the light seeing layer or retina. The lens is an oval disc which sits behind the pupil and iris.

15. HYPOHIDROTIC (ANHIDROTIC) ECTODERMAL DYSPLASIA HYPOHIDROTIC (ANHIDROTIC) ectodermal dysplasia. DEFINITION 1. Hypohidrotic (Anhidrotic)ectodermal dysplasia. 2. Hidrotic ectodermal dysplasia (Clouston Type). http://www.icondata.com/health/pedbase/files/HYPOHIDR.HTM

Pediatric Database (PEDBASE) Discipline: GEN Last Updated: 7/08/98 HYPOHIDROTIC (ANHIDROTIC) ECTODERMAL DYSPLASIA DEFINITION: An x-linked recessive disorder characterized by a triad of defects including hypohidrosis, hypotrichosis, and anomalous dentation. EPIDEMIOLOGY: incidence: ? age of onset: infancy -> childhood risk factors: familial - x-linked recessive chrom.#: Xq12.2-13.1 gene: ? also an autosomal recessive form PATHOGENESIS: 1. Background also called Christ-Siemens-Touraine Syndrome, Anhidrotic Ectodermal Dysplasia, Ectodermal Polydysplasia, Hypohidrosis-Hypodontia-Hypotrichosis one in a heterogeneous group of disorders (there may be over 120 different types) characterized by a number of defects involving the teeth, skin, and appendageal structures (hair, nails, and eccrine and sebaceous glands): 1. Hypohidrotic (Anhidrotic) Ectodermal Dysplasia 2. Hidrotic Ectodermal Dysplasia (Clouston Type) 3. EEC Syndrome 4. Rapp-Hodgkin Ectodermal Dysplasia 5. Robinson-Type Ectodermal Dysplasia 1. Eccrine Glands - sweating deficit

16. HIDROTIC ECTODERMAL DYSPLASIA HIDROTIC ectodermal dysplasia. DEFINITION 1. Hypohidrotic (Anhidrotic) EctodermalDysplasia. 2. Hidrotic ectodermal dysplasia (Clouston Type). 3. EEC Syndrome. http://www.icondata.com/health/pedbase/files/HIDROTIC.HTM

Pediatric Database (PEDBASE) Discipline: GEN Last Updated: 7/08/98 HIDROTIC ECTODERMAL DYSPLASIA DEFINITION: An autosomal dominant disorder characterized by hypotrichosis, abnormal nails, and hyperkeratosis of the palms and soles. EPIDEMIOLOGY: incidence: rare age of onset: infancy -> childhood risk factors: familial - autosomal dominant with complete penetrance chrom.#: ? gene: ? M = F French and Chinese populations PATHOGENESIS: 1. Background also called Clouston Ectodermal Dysplasia, Fischer-Jacobsen- Clouston Syndrome, Jacobsen Syndrome, Ungual Ectodermal Dysplasia one in a heterogeneous group of disorders (there may be over 120 different types) characterized by a number of defects involving the teeth, skin, and appendageal structures (hair, nails, and eccrine and sebaceous glands): 1. Hypohidrotic (Anhidrotic) Ectodermal Dysplasia 2. Hidrotic Ectodermal Dysplasia (Clouston Type) 3. EEC Syndrome 4. Rapp-Hodgkin Ectodermal Dysplasia 5. Robinson-Type Ectodermal Dysplasia the Ectodermal Dysplasias may be due to disturbances in the tissue derived from ectoderm -> absent or hypoplastic glandular systems: 1. Eccrine Glands - sweating deficit

17. Ectodermal Dysplasia What is ectodermal dysplasia? Each combination is considered a distincttype of ectodermal dysplasia. How is ectodermal dysplasia treated? http://dentistry.ucsf.edu/cranio/ectodermal.htm

What is ectodermal dysplasia? Ectodermal dysplasia is a disorder involving two or more of the ectodermal structures, which include the skin, hair, nails, teeth, mucus and sweat glands. Each person with ectodermal dysplasia may have a different combination of defects. One may have hair and nails affected, while another may have involvement of sweat glands and teeth. Each combination is considered a distinct type of ectodermal dysplasia. How is ectodermal dysplasia treated? Because there are so many presentations of this disorder, several times a year a special ectodermal dysplasia clinic is arranged at the Center for Craniofacial Anomalies at UCSF. This clinic includes our regular team of specialists plus a dermatologist and a prosthodontist. The special needs of the patient are taken into consideration as a treatment plan is developed which may include recommendations for dentures or implants, special treatment for hair, nails and skin, or recommendations for lifestyle adjustments to maximize comfort and health. A child with ectodermal dysplasia may encounter social and emotional challenges unique to this condition. Support organizations and resources are available for children and their families (see

18. Ectodermal Dysplasia Library E F. ectodermal dysplasia. Where to Go to Chat with Others.ectodermal dysplasia Internet Mailing List. Learn More About It. http://www.familyvillage.wisc.edu/lib_ecto.htm

Ectodermal Dysplasia Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search AltaVista for "Ectodermal Dysplasia" Who to Contact National Foundation for Ectodermal Dysplasias 219 East Main, Box 114 Mascoutah, Illinois, USA 62258-0114 Fax: [618] 566-4718 The National Foundation for Ectodermal Dysplasias (NFED) provides support and information to those affected by ED, assists the medical and dental profession with useful information on early diagnosis and treatment options, identifies medical facilities with multi-disciplinary treatment teams for ED, maintains a data base of health care professionals with expertise on this condition and conducts educational meetings for families and health care providers. NFED will also provide financial assistance to qualified families for medically necessary care, such as dental care, wigs and air conditioning. NFED has local chapters and prints a directory of members each year which identifies age, type of Ectodermal Dysplasia, and geographical location. The Foundation publishes a newsletter

19. Family Village -- Hypohidrotic Ectodermal Dysplasia Library G H. Hypohidrotic ectodermal dysplasia. Learn More About It. Hypohidroticectodermal dysplasia From the Journal of Clinical Investigation. http://www.familyvillage.wisc.edu/lib_hypoh.htm

Hypohidrotic Ectodermal Dysplasia Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search AltaVista for "Hypohidrotic Ectodermal Dysplasia" Who to Contact P.O. Box 9421 Hampton, Virginia 23670-0421 E-mail: smoody@hedfoundation.org Website: http://www.hedfoundation.org/ The mission of the HED Foundation is to improve the quality of life for children suffering from HED and related disorders that affect the body's ability to cool itself. One of the most important ways in which the HED Foundation enhances the quality of life is through the distribution of personal cooling systems, most commonly the KoolVest ®. Where to Go to Chat with Others We are unaware of any discussion forums specifically for this diagnosis. However, there are several forums that may be of interest to parents of children with disabilities or special health care needs regardless of diagnosis. See General Disability On-Line Discussion Groups Learn More About It Hypohidrotic Ectodermal Dysplasia From the Journal of Clinical Investigation Hypohidrotic Ectodermal Dysplasia From National Organization for Rare Disorders (NORD) Hypohidrotic Ectodermal Dysplasia From PEDBASE Hypohidrotic Ectodermal Dysplasia with Hypothyroidism and Agenesis of the Corpus Callosum From Online Mendelian Inheritance of Man (OMIM) Hypohidrotic Ectodermal Dysplasia with Hypothyroidism and Ciliary Dyskinesia From Online Mendelian Inheritance of Man (OMIM) Web Sites Glen's Story HED Foundation and Related Disorders: CoolVests HED Foundation and Related Disorders See description above.

20. Anhydrotic Ectodermal Dysplasia Anhydrotic ectodermal dysplasia Oligodontia with conical teeth. the NationalFoundation for ectodermal dysplasia. Return to Image Index page. http://tray.dermatology.uiowa.edu/AnEcDy01.htm

Dept. of Dermatology - University of Iowa College of Medicine Anhydrotic Ectodermal Dysplasia - Oligodontia with conical teeth For more information see: the Online Mendelian Inheritance in Man (OMIM) the National Foundation for Ectodermal Dysplasia Return to Image Index page. Return to Image Index page. Return to Dermatology's Home page. September, 1995

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